MIDDLE-AGED WOMEN 40-60ish
Comments
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Health Insurance and the law -
I have navigated the labyrinth of health insurance far more than I care to remember. I have discovered more than I ever wanted to know. Little known fact: The law in effect states that an insurance company cannot deny a woman recon as they once did based on it being cosmetic. They are not required to cover it more than any other procedure that is covered by the policy. In addition, they are only required to cover the patient as long as the insurance policy is still in effect.
Soo.. here is my long story. My wonderful health insurance would have paid 100% on any recon procedure I chose. However, since I had to go on disability during my treatments, I had to be covered by Cobra. Again, the initial coverage would have applied. BUT.. my "lovely arrogant" PS refused to do my recon until after my Cobra stopped. So BC/BS was no longer required to pay 100% of recon... by law. Since I was on permanent disability, I was eligible for Medicare. I had to wait for the 2 years on social security to kick in before I was covered. Since I am single, disabled, and under 65, I am not eligible for supplemental insurance to Medicare. This means that I am responsible for any costs not covered by Medicare.
Apparently, it is a little known fact that Medicare does not cover any of these procedures 100%. I have to pay my portion before the hospital will even consider making an appt for me to have surgery. Since I live alone, I will need help during my recovery. Recon is not a covered procedure for convalescent care, so any help I get, I am responsible for payment. Unfortunately, even my PS did not know all of these facts and thought he was doing the right thing delaying my surgery. By the time I was able to convince him, we had 2 days to get me in for surgery under Cobra. Pre-op tests the day before scheduled surgery, revealed my veins were too small for the DIEP my PS insisted upon. He THEN informed me that he could not do surgery unless I quit smoking for at least 2 months. Even though the smoking would not make my veins large enough to do the surgery and that he knew all along in my treatment that I was a light smoker. By this point, I had been on Cobra for 2 days shy of 2 years. I got the Cobra extension required past 18 months thanks to a clerical error on Social Security end or I would have been without any insurance for at least 6 months before that waiting for Medicare to kick in.
My PS refused to discuss any other options for recon. I was out of time. Now I have a new PS and he is willing to do a simple implant, but I need the co-pays, the deductibles, and the out of pocket cash.
American Cancer Society - Don't get me started
When I first contacted ACS, I needed help because I was having to drive myself to all appts, surgeries, and treatments - a 4hr round trip in the car - alone. ACS informed me that they were unable to help because there were no local resources available. After my emergency second surgery, when I was put on the curb outside the hospital.. again long story.. Hospital refused to let me make long distance call to attempt to get a ride home. A patient advocate was going to put me in a taxi to get me to the bus station, where I would have taken a bus to the nearest bus stop from my house, which is a "flag stop" one hour from the town where I live. Finally through tears and recriminations, I convinced her to call my former supervisor to make the 4hr round trip to take me home. The same supervisor that the hospital breached my confidentiality one month earlier by telling her I was mentally unstable due to my suicidal rants in recovery due to an allergic reaction to the morphine they gave me for first surgery and kept me on for 3 days!!!!
Am I still angry? you bet! that breach is likely what initially cost me my job. Granted after all the s/e and resultant disability, I would not have the job anyway. Mind you, this sounds like a horror story and incredible, and surely took place in a third rate hospital. But this is considered the eminent cancer treatment facility in the state. I am just not lucky!
These forums and my return-
I don't know if I can stay. I realized last night why I left. IT is a wonderful place, unless, like me, you start to feel guilty for being negative when you watch women who have bolstered you and held your cyber hand as you rant, pass from this life. Last night, I went to search out some of the women who had been there in my darkest moments early in my treatment to ask how they were coping. I could not sleep because none of them are here. They didn't stop posting because they needed a break, as I did. They bravely stayed and helped other women until they could no longer help anyone. I stopped visiting these forums because I could not watch another woman lose this battle and maintain my sanity as I rant against the injustice. I have spent the day thinking that maybe I should pick up the standard and carry on as they did, but I can't. I am too weak and too cowardly. I am not grateful to be alive. I am angry that so little is done to save these women and so little thought is given to the quality of life of the survivors.
I guess I haven't changed at all from the angry disillusioned woman that struggles daily against wallowing in self pity and depression, picking up the pieces of my life, watching "friends", neighbors and co-workers burn out or just walk away because it is demanding to be my friend. I wish that I could save every one of you from this horror and never have to see another woman fight it. Know that I care very much about each and every one of you. Keep fighting! To those of you who have stayed... hats off to you! You are stronger and braver than I am.
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cmharris - I dont know that any one of us is braver or stronger than another. Everyone's illness and tx is very "personalized" and we all have different demons that plague us. Our unique personalities are what keeps these boards very much alive. Some come to lurk, some come to post every now and then, some are daily readers/posters. There is no right way to "do" the boards. That's the beauty of it. Members are here when you need them to be - no matter the reason.
After reading your story, I can certainly understand why you feel as you do with the medical & insurance systems. I don't know that I would be able to find the silver lining in all of it. I cannot say that I understand what you are going through as you are dealing with a lot of things that I have not had to. I feel guilty because I am doing so well - I have not had to undergo chemo or rads. My first line of tx has been working for 19 mos now. I know that will change someday and then what? Will I be as upbeat then as I am now - who knows?
I guess I want to say that our fears, frustrations, and concerns are all legitimate. None are more important or more trivial than the next persons. Although I would like you to stay and hang out with us, I respect any decision that you make about being here. I do hope that you are able to find some peace with your situation and that you are able to find what you need to be able to move on and be happy. Keeping you in my thoughts - ((hugs))
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cmh59, Your feelings are not foreign to me. I have a couple doctors I blame for not utilizing every opportunity to diagnose me and for not coming forward with a key piece of info., which might have gotten my treatment started six mos. earlier. I don't even know if it would have made a difference, but I continue to harbor that grudge and now just hope that their colleagues can save me. I have a lot of bitterness, fear, and the feeling of wanting to shove a 20ft. long flaming colonscope up their a$$e$ on a daily basis. I think that I DO suppress a lot of that when I post here (and I want to because it is CRC and not B/C, although I never did want to join another online support group.) Anyway, your story is important, and real, unfortunately representing some worse-case scenarios. Feel free to post as little or often as you wish. Most of us here are strong enough to hear it. Most of us wish we could do more than offer kind words and help fix your situation. If you decide to back off again, I hope you one day will reappear with a story of reconstruction and I hope it will be a good one. You deserve that.
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CMH, you were missed. I am so sorry for all yu have gone through. When I was first looking for recon, I went to a PS who said he could fix the BC side for around 9k after my insurance paid. I felt destined to live without recon. Then I was directed to a PS who thought he could help. He told me it was all in the coding of the procedures properly (Not underhandedly). I had the first step of my recon done for $900 out of pocket and the second step was $600 out of pocket.
(((CMH)))
Eli~, you've done it now. I have seen the commercials for Luminocity but somehow managed not to check it out. With your endorsement, I have set up a log in. I even managed to not care that I wasn't optimizing my training by paying to unlock all the programs, and will most likely be there every day until I get distracted....Oh, look at the pretty butterfly!
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cmharris59-
If I had suffered all of your BC experience, I too, might have just said "F-it" and kept my thoughts to myself. No one wants to be Debbie Downer, and constantly reliving bad experiences by posting on these forums probably was not helpful for you to feel better.
Isn't there a possibility though, that some of the women you got to know here simply went away because they have NED or are in remission and have moved on? That is what I would eventually like to do. Losing even one friend (even a cyber one) leaves a scar that hits close to home and reminds us all of our mortality. But I would like to think (hope) that some women move on because they want to forget about BC (or CC like Elimar) and that they return to normal (and sometimes even more meaningful lives) after their experience. I imagine some that know they will eventually succumb to this disease leave because they have found an inner peace and want to squeeze all they can out of time remaining without publicizing details.
This forum (and others) was so helpful to me in my early days after surgery. I think it is a wonderful place to come, share and learn. And when it's not, no one will fault you for leaving. We all just want the best for each other through this crappy disease.
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Cmh: please stay here with us, even if only to read. I feel so close to all who post and learn and share everyday....morning and night, even though I rarely post. We will be carrying you in our hearts to help lighten your load. BE
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Thanks for the support!.. I have been on an emotional roller coaster coming back to the forum. It has brought back lots of memories I would rather forget. Like the wretched post-it note I was handed, telling me I had cancer; the slogging through first opinions, second, and third, doctor after doctor, until I finally found ones that seemed to actually listen to me and had some competence with cancer, and being let down by them and the lies they told me (yes, some admitted to lying to me about my treatment and my prognosis); the endless hours of research, I pored through on the internet and in the library; the financial and emotional loss of a career I loved; crying jags and furious outbursts in waiting rooms; hours sitting on a curb still woozy from anesthesia wondering how in hell I had come to that point; long nights sitting at the computer in the chat room with survivors; hating every minute of this dreadful disease and realizing how disillusioned I had been about the progress that cancer research professes to have made.
Eli: I know you have been around awhile. I remember when you started this thread. I posted some then, but had trouble relating to some of the women. So many of you have families and husbands. I lost my dad two years ago. He had suffered from Alzheimer's for the last couple of decades. What family I have is extended and scattered across the country. The nearest is over 400 miles away. My sister (poor thing is 3000 miles away), is jealous of my cancer. She believes that I am getting sympathy from our parents that she deserves. She went on disability after my DX due to a nervous breakdown; she couldn't handle me getting the spotlight. I do not say this because I think it. She told me. She refused to visit while I was going through treatment until her daughter threatened her with not seeing her grandson. My niece was my rock until she moved to TX. Anyway, what I had started to say, was that I remembered thinking... why hadn't we thought of a middle forum before? lol Unfortunately, I still wasn't sure I fit.. I felt more like the younger single women, yet guilty because they were younger and had not lived as much I had. I still don't know where I fit. Still, I would gladly come help ya with the colonoscopy revenge!
Staynsane: I would love to believe that those women moved on. Unfortunately, because although my cancer was early stage, I bonded with many women having late stage cancer. They could relate so clearly to the frustrations, anger, and helplessness, I have felt. They came through to let me know that my issues were not trivial and that horrible permanent s/e's and stopping treatment in early stage cancer can be as rotten as DX with later stage cancer. They understood the anger I felt unjustifiably that other women had it easy and we were fighting tooth and nail. Some could relate to the abandonment that I felt, since some had friends and family that could not handle their late stage cancer any better than my friends and family could handle my early stage albeit complicated case.
Barsco : Unlike me, they stayed and still managed to feel sympathy and support on this forum for women in all stages of this disease. Strong? Brave? Yes, they were able to put their own frustrations and anger on the back burner, as Eli said , they suppressed it, and were able to help others. Sure, they also lashed out and we commiserated over shared angers, but they stayed.
I came back and had hope when I saw that they were no longer posting that they too had moved on. But as I looked for their posts to get some indication of what they might be doing, I realized that I was wrong. I found them on the Angels thread. Some I missed by 2 years, others by just months. I came back to tell them I missed them, was sorry that I had let the PMs drop, and I find that I missed them.. truly... in their last weeks. Those brave beautiful women helped me so much. I knew the odds that I would lose these souls to cancer were very real. I had seen it with so many in the first few years that I posted. Still, it is painful. It does scar. I know the medical term is survival guilt. and YES! I have it! I also have deep rooted anger, depression, and fear... not of dying, but of living... like this... I mourn the loss of my carefree, happier days... content with my career, my cats, the occasional SOs that flitted in and out of my life... the belief that I had donated to the cause and changes were being made, progress.. HA! I wish that I could have changed places with all of those women; they had so much to give, and so much potential. Yet, here I sit... burned out, angry, and once again... wallowing in self pity. One of my oncologists finally admitted that she had never understood my ingratitude for surviving, but now she realized that it was the drastic decrease in quality of life that I feared would and did become reality. I never wanted us to JUST survive. I wanted us to LIVE! I hate being a SURVIVOR! Still, she has never offered counseling... lol
I guess she still doesn't think it is serious enough. I wonder what it would take to convince her.
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cmharris, I join those hoping that you stick with us here even if you don't post. The occasional bursts of laughter that someone's post generates is reason enough! And maybe someone else from GA will come on here and read your story, and be able to offer more than just cyber encouragement. Maybe they could meet you for coffee, be a friend with an ear and a shoulder.
As for finding out that some of your friends were on the Angels thread, I've been asked many times in the last 8 yrs how I can deal with so many of my friends dying. I'm very active in the Chat Rooms also, and have travelled 5 times with BCO members to various locations and made true friends for life. Sometimes that "for life" turns out to be months. It breaks my heart, but I've met so many amazing women through BCO, whether online or in person and I wouldn't trade that. Each one has caused me to rethink certain aspects of my own life, my own behavior, my own preconceived notions. I've grown because of knowing them, even if I grieve eventually. Please don't regret that you didn't get to say "thanks" to some of them ... I'm sure they knew it in their hearts. We form special bonds here. With some, it's a little deeper than others. Funny how that can happen online just like it does in person. My rambling point is that we want to stay connected with you, and have you stay connected with us...on the okay days and on the shitty days. If there are more of the shitty ones, we'll try to put a little more laughter out there to bring the occasional smile to your face.
Hugs sweet sister. Like my tagline says, we're all just walking each other home.
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marlegal: You are absolutely right about the wonderful connections even though short-lived. I have no regrets about meeting and forming those bonds with those lovely souls, just that they are gone and I miss them. Elizabeth/Konakat was a dear friend and a light in the darkness. I cannot believe that I was naive or just oblivious to think that I would find her here still. I DO regret thinking that I had time... time to step back, try to find that independent spirit that made me thrive before BC, and realizing that some bonds are too precious and fragile to put on hold.
I thought I could log in and say.."Look! I am improving! I am finding some acceptance for this disease. Even in some worse case scenarios there is hope." The last 48 hrs and the hefty bags full of Kleenex have proven that I was kidding myself. I don't accept a damn bit of it. The only improvement is that I bury my head in the sand now. I don't do self exams; I stopped having blood work, scans, and scrutinizing every change in my health; I put off follow up visits and mammos. I just don't want to know anymore.
I play computer games with strangers in cyber space where I can pretend that I am healthy, young, whole, and free of worry. Maybe if I pretend long enough I will be. I know that I play the "if only" game. If only.. I had recon, then I could date again without the fear that sex will be excruciating - as if the two are connected.. LOL; if only... I could wean myself off the pain killers, I could dance and walk again without a cane - truth is just the opposite, only more pain killers will accomplish that; if only... I could get a good cardiologist and better asthma meds, I would have more energy - ya and if I got rid of my cats, my allergies would go away.. but so would my reason for living; if only.. I had shelves in my kitchen, I would get organized and have a clean house - ya that worked .. NOT; if only.. I could get health insurance that covered vision and dental, I could feel attractive again.. translation: be able to put on makeup that doesn't look like I work in a circus and have a pretty smile again - OK, maybe that one is close to realistic, but getting insurance coverage sure isn't; if only... I avoid the boards for a few years, all of the horror will disappear.... and I will be the only cancer survivor struggling... other women effected by this disease will be happy and live wonderful lives.. I will be the anomaly... Well, that is NEVER gonna happen in my lifetime.
If I do disappear from the boards, feel free to believe that I have found those dear friends alive and well; that I am doing yoga and belly-dancing again; that I am happy, in love and having grand sex; that I am back at work in a new lab looking for a better cure; moving on with my life and it is better than ever! yeah... IF ONLY.... see? I can play that one well... LMAO!
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cmharris:
I was really worried about you. I am so glad you came back! I wish I were rich so I could help out, but I'm just a middle-aged, former school teacher, so you know I am scrapping by. LOL. But you hung in there! I feel so good about you. You're a tough woman, warrior woman!
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CMHARRIS:
I am now glad that my post ended up on the wrong page, or place, or whatever.
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Hi ladies have not been on here in a while just reading posts hope every one is doing good and had a great Memorial day. It has been nice out and I finally got my flowers in
and just taking it day by day trying to survive0 -
Got to head out to work, but I SIGNED THE LEASE !!! I HAVE THE KEYS !!!! Queen of Tarts is going to happen.
Have a great day!!
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Hooray Dianarose!!!! That's great news for you - and the hoards of customers that will be beating down your door! My mouth is watering just thinking about all of the goodies!
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Good to see you again Momto7! Keep on keepin on.
cmh - Sure hope those "what if's" turn into reality for you someday soon. They are some great goals to have. You mentioned that your onc has not mentioned therapy. What about your primary dr? Perhaps a referral from him/her?
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Hi there, Miz-Jackie-Kennedy-face, glad that you stopped by. With you being some months out of chemo, we need to get a "hair report" from you.
I had chemo 4/12 yesterday. It seems like I lost a few extra hair stands in the wash the last time. Still don't have quite enough to donate yet. It has been hard to grow hair when my protein is kept busy trying to do cell repair on my chemo ravaged tissue. I think I will try a collar length razor cut when the time comes, but not sure who is going to do the cutting. When you rock the long hippie hair, it's not like you have a regular stylist.
DianaRose, Woot-woot, she has the keys! Poised and ready for the Tart Takeover. Are you going to be located near enough to create competition for your boss? If so, does she know yet?
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Congratulations Dianarose0 -
Yippee!! Jumping up and down for you, Dianarose!
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Calling Momine...
I saw a thread that you started about Intermittant Fasting. Can you write a bit about it here, and those interested can follow along on your thread. Link to it. I thought it sounded doable, but I have to do the opposite of fasting right now.
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Elimar, sure, I will just link the thread, it is really easier. I will continue to update with foods and their calorie counts as I go along (if I can stick it out, we shall see).
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Here is the thread:
http://community.breastcancer.org/forum/79/topic/805169?page=1#idx_19
and here are the menus for the first 2 fasting days:
Day 1:
Breakfast: 3oz fat-free, Greek yogurt with spices added as a dip for raw cauliflower or other low-carb veggies plus my usual coffee with low-fat milk. According to fitness pal, this amounts to 110 calories.
Lunch: A large salad of assorted salad greens with a dressing made from roasted garlic, parsley and lemon juice (no oil). I may add a small amount of plain chicken breast, if the calories work out.
Dinner: No-fat broth with some veggies.
Day 2:
Breakfast: 1/4 container (the full container is 6oz) Greek, zero-fat yogurt, with a lot of finely chopped parsley mixed in, salt and pepper, with a yellow pepper in strips that I dipped in the yogurt. 5 almonds. Coffee with low-fat milk. 120 calories.
Lunch: Creamy cauliflower soup. I took about 1 cup cauliflower and a large carrot. Boiled that in veggie broth (cube) along with a little seaweed (I had it on the shelf and it adds a bit of taste and minerals). Pureed it with the blender. Then took another 1/4 cup of the non-fat yogurt with herbs etc and stirred that into the soup. 150 calories and it actually tasted pretty good and felt like a meal.
Dinner: 3 cups salad greens with 3oz poached turkey breast, dressed with parsley/lemon/garlic puree (no oil). 175 calories.
Snacks: Raw cucumber. 3-4 inches of English cucumber is around 25 calories.
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Thanks, Momine. After my DH did that prep for his c-scope, he mentioned that he would like to do the liquid diet just as an intermittant fast, but I think something like this would be better and more doable and less hungerable (not my best made-up word, but not my worst!) I'm going to mention it to him. Me, I'll just take notes for later, and I do like how you put the Mediterranean spin on your recipes.
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Elimar, lol, it has only been two days (with several normal days in between), but so far it really feels totally doable. I also have the feeling that with a bit of practice, it may get even easier. Today I have really not felt unpleasantly hungry at any point.
As for the Mediterranean spin, it never occurred to me, but after 15 years in Greece, that is just how we eat.
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I had lost all of my hair even eyebrows and eyelashes UGH!!! They are growing back which is good so is my hair but it is not blonde anymore it is all gray
will have to see what it looks like when it gets longer still wearing scarves and sometimes a wig when I go out0 -
I lost all of my hair also.. twice.. except the hair on my forearms.. lol Mine came back grayer than before.. but I dye it now.. lol mine also came back healthier , thicker, and grew super fast after about the first 6 mths. It is now nice and long.. to my waist.. thick, wavy, and have almost no split ends... hang in there.. I will say mine was growing back during the summer and it was a great transition for me... gave me time to get used to it without worrying about the heat... hot flashes were bad enough.. lol
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elimar, thanks for making me laugh out loud! Being in this club is somewhere no wants to be, but I can say I have never felt such love and humanity as I have in this club. The love, thoughtfulness, compassion and caring are the real deal here.
staynsane, i just love your name. It put a smile on my face.; it speaks for us all.
cmharris, I am sorry to hear of all that you been put through--hang in there. Last year, by chance, I took out cancer insurance--didn't know I was going to get BC less than a year later. Well that iinsurance company fought me tooth and nail trying to prove I had a preexisting condition. I had to gather medical records from several hospitals, pharmacies, doctors, ect. all while I was in the thick of having surgery and treatment. Finally, after two months, they gave up and started to pay out. Their first payment was a measly $1,400 and I don't see much coming after that. Thankfully my job has decent insurance--that pays most of my bills. It is sad that we have to work so hard to get decent medical treatment that can be based on how much insurance or money you have.
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Dwilli: WOW! I am so glad that they finally paid off on your cancer insurance!! Kudos to you! That is disgusting that it hasn't paid out more than that though! I thought I was being paranoid, when I paid for the extra disability insurance at work.. Now I wish I could have gotten more.. It barely covers the basics.. I had great health insurance through work, paid 100% of everything, until my treatments outlasted Cobra..I never thought of cancer insurance, it just didn't run in my family. Longevity did. MY great grandmother was 103, grandmother 101, mom is almost 90 and in better health than me, dad was 90, my siblings are older and no major health issues. I always figured I would have to worry about retirement and nursing home insurance. I did manage to save a lot for retirement but expected to work another 20 years and my 401k took a major nose dive at the same time that I got hit with cancer. Always thought if it took a hit I could recover , put a little more in, and as I got close to retirement age, go with less risky investments.. Instead not only did it get hit hard, but I had to use hardship withdrawals to cover debts that I could never have paid off on disability income.One of my biggest peeves is my life insurance policy.. I had a great one through work. But my HR rep screwed up when I was terminated. She didn't give me the right paperwork to convert it to a private policy instead of one through work. So now I have no life insurance and it is cost prohibitive to get one. Damn, sorry I started out wanting to congratulate you for the foresight and segwayed (sp?) into CMH nightmare world again.. I am bitching again... grrr.. And you are absolutely right, the state of health insurance in this country is deplorable. I found out that even when you know it's bad and you are lucky enough to afford it and think you have protected yourself, you can still get blindsided.
OK on a lighter note... HAIR... chemo put me in menopause and when my hair started growing again...I was standing in front of my bathroom mirror one morning... sun shining in the bathroom window to my right.. and OMG! I was growing a beard!!! the sun hit the hair on my face and I was covered in it... I freaked out!! I called my niece in tears, totally losing it... "I have peach fuzz all over my face!! Chemopause is turning me into a guy!!" She said "breathe Auntie, I will be over as soon as I can" . She drove over for a visit the next weekend on her day off. She got up really close to me and took one look at me and said, "OMG Auntie, that is the same facial hair you have always had, it's just you haven't seen it in so long!" She is absolutely right. I don't even notice that I have hair on my face anymore. If I get out my magnifying mirror .. sure enough there is that little light dusting of facial hair that I have always had.. no one else ever notices... but when it first came in.. I had gotten so used to not having hair anywhere... scared me to death. All I could think was.. Just when I thought it couldn't get any worse? ROFL..
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cmh - got a chuckle out of the facial hair story. Haven't done chemo but if/when I do - I will keep this in mind. Also good to know that head hair can come back in quite nicely.
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cmharris- Thanks for the laugh! My eyesight is not nearly what it used to be and every couple of months I do a close up inspection of eyebrows, facial hair, nose hair, etc. This takes good light and good glasses, and is never pretty! Thirty minutes later I feel sleek and rejuvenated after plucking and trimming away. I'm not one to have these services performed elsewhere, and if I forget to do it myself, my brows start looking like my husband's (he verges on Andy Rooney brows until I mow them down when I cut his hair). Then I hit his ears, his back...men get hairier and hairier with each passing year!
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Facial hair... I really don't remember having any before chemo, but man did I get it after! I stood there and looked at it and then thought, ok...do I want to shave? No. Will I get laser? No. Wax? No! So I decided to ignore it and that's worked very well for me
dwilli, forgive my late welcome to our group. Love new takes on life, etc. from new members. Sorry about the whole bc thing of course!0
